Health-Related Quality of Life and Mental Health of Children with Embryonal Abdominal Tumors.

(1) Background: Embryonal abdominal tumors are one of the most common entities of solid childhood cancer. The present study investigates the Health-Related Quality of Life (HRQoL) and the mental health of children to obtain a comprehensive picture of their health status and uncover a possible gap in healthcare. (2) Methods: The sample consisted of 54 children who were treated for embryonal abdominal tumors and a control group of 46 children who received uncomplicated outpatient surgery. The HRQoL and the mental health were assessed by the parent proxy reports of the questionnaires Pediatric Quality of Life Inventory (PedsQL) and Strengths and Difficulties Questionnaire (SDQ). (3) Results: Children with embryonal abdominal tumors showed significantly lower HRQoL and mental health values compared to the norm data. The index group showed lower values in the social subscales of HRQoL and mental health compared to the control group. (4) Conclusions: Embryonal abdominal tumors affect the well-being of children. There is still a gap in healthcare due to children's HRQoL and mental health, especially regarding social development. It is essential to further advance the psychological care of children and improve their chances to develop social relationships.

A Systematic Review of Parent-Child Communication Measures: Instruments and Their Psychometric Properties.

Parent-child communication represents an important variable in clinical child and family psychology due to its association with a variety of psychosocial outcomes. To give an overview of instruments designed to measure the quality of parent-child communication from the child's (8-21 years) perspective and to assess the psychometric quality of these instruments, we performed a systematic literature search in Medline and PsycInfo (last: February 25, 2022). Peer-reviewed journal articles published in English with a child-rated instrument measuring the quality of parent-child communication were included. Initial screening for eligibility and inclusion, subsequent data extraction, and quality assessment were conducted by couples of review team members. Based on the screening of 5115 articles, 106 studies reported in 126 papers were included. We identified 12 parent-child communication instruments across the studies. The Parent-Adolescent Communication Scale (PACS) was used in 75% of the studies. On average, the evidence for psychometric quality of the instruments was low. Few instruments were used in clinical and at-risk samples. Several instruments are available to rate parent-child communication from the child's perspective. However, their psychometric evidence is limited and the theoretical foundation is largely undocumented. This review has limitations with regard to selection criteria and language bias.Registration PROSPERO: CRD42021255264.

Quality of life and mental health of children with rare congenital surgical diseases and their parents during the COVID-19 pandemic.

BACKGROUND: COVID-19 has affected our society at large, particularly vulnerable groups, such as children suffering from rare diseases and their parents. However, the psychosocial influences of COVID-19 on these have yet to be investigated. As such, the study's goal was to evaluate the health-related quality of life (HRQoL), quality of life (QoL), and mental health of children with rare congenital surgical diseases and their parents during the COVID-19 pandemic and lockdown measures. METHODS: A survey of n = 210 parents of children with rare congenital surgical diseases and a control group of n = 88 parents of children without rare diseases was conducted cross-sectionally between April 2020 to April 2021. Data on HRQoL, QoL, and mental health was collected using standardized psychometric questionnaires for children and parents presenting to the pediatric surgery department at a university hospital. RESULTS: Mothers of children with rare pediatric surgical diseases showed significantly lower QoL and significantly higher impairment in mental health than a control group and norm data. For fathers, this was solely the case for their QoL. Children's parent-reported HRQoL and mental health were partially impaired. Social and disease-specific risk factors of the respective outcomes in affected families were identified through regression analysis models. CONCLUSION: Parents of children with rare diseases report severe psychosocial impairment regarding themselves and their children during the COVID-19 pandemic. Therefore, affected families should receive attention and supportive care in the form of a family-center approach to alleviate the additional burden of the COVID-19 pandemic.

Perceived mental health in parents of children with rare congenital surgical diseases: a double ABCX model considering gender.

BACKGROUND: Previous research has supported the utility of the Double ABCX model of family adaptation for parents in various diseases. Nonetheless, it remains unclear how raising a child with rare congenital surgical diseases impacts the mental health of both mothers and fathers. METHODS: The potential predictors of maternal and paternal mental health in a German sample of 210 parents of children with rare congenital surgical diseases were investigated. Parents were investigated cross-sectionally utilizing standardized psychometric questionnaires that assessed factors attributed to parental adaptation within the Double ABCX model. RESULTS: Stressor pile-up, family functioning, perceived stress, and mental health were positively associated with mothers and fathers. However, further analyses revealed that family functioning, social support, and perceived stress fully mediated the positive association between stressor pile-up and mental health in mothers, but not fathers. CONCLUSION: Our findings suggest that parental adaptation to a rare congenital surgical disease in their children may be improved by increased intra- and extrafamilial resources and decreased perceived family-related stress in mothers, but not fathers. Our results may help to identify gender-specific factors that may guide clinicians and future interventions.

Family Functioning in Families Affected by Parental Mental Illness: Parent, Child, and Clinician Ratings.

Family functioning is often impaired in families with a parent with mental illness and is linked to child mental health. This study aims to gain a better understanding of family functioning in affected families by comparing ratings among family members and by analyzing associations with clinician-rated family functioning. The cross-sectional sample comprised 210 families with ratings of 207 patients, 139 partners, and 100 children. Parents with a mental illness as well as their partners and children completed the German version of the Family Assessment Measure (FAM). Clinician ratings were obtained by the Global Assessment of Relational Functioning Scale (GARF). We conducted several mixed models to compare ratings of family functioning while accounting for family cluster. Family dysfunction was consistently elevated compared to a normative sample. On several domains, parents with a mental illness perceived family functioning to be worse compared to their partners and children. Partners and children did not differ in their perceptions of family functioning. Ratings of family members were moderately associated with clinician ratings. We discuss the importance of multi-informant assessment of family functioning and the implementation of family-based interventions for families with a parent with mental illness.

Being the Pillar for Children with Rare Diseases-A Systematic Review on Parental Quality of Life.

Parents caring for children with rare diseases fear the long-term progression of the child's disease. The current study aims to systematically investigate the quality of life (QoL) in parents of children with different rare diseases. We performed a systematic literature search including quantitative studies on QoL of parents caring for children and adolescents with rare diseases in five databases (APA PsycArticles, APA PsycInfo, MEDLINE, PSYNDEXplus, and PubMed) published between 2000-2020. Of the 3985 titles identified, 31 studies met the inclusion criteria and were selected for narrative review. Studies were included if they investigated predictors of parental QoL or reported QoL compared to normative samples, parents of healthy children, or children with other chronic diseases. We used the Newcastle-Ottawa Scale to assess methodological quality. The systematic review revealed that parents of children with rare diseases experience reduced QoL compared to parents with healthy children and norm values. Psychosocial factors, beyond disease-specific predictors, were shown to influence parental QoL substantially and may thus present an essential aspect within interventions for this highly burdened group. Health care professionals should consider and address the impairment of parental QoL due to the child's rare disease. We discuss insights into existing research gaps and improvements for subsequent work.